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Hepatitis C (Expert Forum)
Post TX Side Effects - And a Million other questions
Answered by
Douglas Dieterich, MD - Internal Medicine, Gastroenterology
The Mount Sinai Medical Center
New York - NY
Questions posted in the Hepatitis C Forum are answered by medical professionals from The Mount Sinai Medical Center.
Post TX Side Effects - And a Million other questions
by meki, Jun 05, 2008 01:53PM
THANK YOU for stepping up to this forum.
Second, if you've read the forum for any time, you're aware of most of us - some of our problems and some of the side effects that a portion of us appear to be having.
Currently - I'm going through some sort of Neuropathy Pain issues, which I believe were caused by the chemotherapy combination of Pegylated Interferon Alpha 2-a and Ribavirin (brands Pegasys and generic Riba).
If it is Extrahepatic (caused by HCV) will it ever go away? Or again the same question with it being drug induced?
Should I expect more side effects in the long run - or is this about the time frame (1 year 5 months post TX with SVR status) when I should already know if there is anything else going to be happening - for example autoimmune disorders, etc.?
Third - I want to say something to the medical community: Doctors REALLY need to be aware of the side effects that actually DO happen on the TX. For some of us - those sides are terribly downplayed and what we go through is extremely difficult to manage. When your general practioner is not aware of those side effects --- I suppose both caused by HCV and by the TX --- then the patient can be made to feel insecure --- and start having doubts as to their own sanity.
And last, but not least (grin) - can you answer some or any of these questions:
1) Once you are SVR --- when do you suggest not checking PCRs any longer?
2) Cured or in Remission - once in SVR? Will the virus ever come back?
3) Does the liver heal itself and return to normal?
4) Is someone who is SVR HCV contagious?
5) Can someone have multiple genotypes at the same time?
6) Will someone who has obtained SVR ALWAYS show as having HEP C on Hep Panel Screening?
7) Is someone who has HCV 3a - in any way - innoculated or safe from getting that specific genotype again? Or any other genotype? In other words do we build any immunities to the virus?
I AM SO VERY GLAD YOU TOOK OVER THIS FORUM... THANK YOU.
Meki
Second, if you've read the forum for any time, you're aware of most of us - some of our problems and some of the side effects that a portion of us appear to be having.
Currently - I'm going through some sort of Neuropathy Pain issues, which I believe were caused by the chemotherapy combination of Pegylated Interferon Alpha 2-a and Ribavirin (brands Pegasys and generic Riba).
If it is Extrahepatic (caused by HCV) will it ever go away? Or again the same question with it being drug induced?
Should I expect more side effects in the long run - or is this about the time frame (1 year 5 months post TX with SVR status) when I should already know if there is anything else going to be happening - for example autoimmune disorders, etc.?
Third - I want to say something to the medical community: Doctors REALLY need to be aware of the side effects that actually DO happen on the TX. For some of us - those sides are terribly downplayed and what we go through is extremely difficult to manage. When your general practioner is not aware of those side effects --- I suppose both caused by HCV and by the TX --- then the patient can be made to feel insecure --- and start having doubts as to their own sanity.
And last, but not least (grin) - can you answer some or any of these questions:
1) Once you are SVR --- when do you suggest not checking PCRs any longer?
2) Cured or in Remission - once in SVR? Will the virus ever come back?
3) Does the liver heal itself and return to normal?
4) Is someone who is SVR HCV contagious?
5) Can someone have multiple genotypes at the same time?
6) Will someone who has obtained SVR ALWAYS show as having HEP C on Hep Panel Screening?
7) Is someone who has HCV 3a - in any way - innoculated or safe from getting that specific genotype again? Or any other genotype? In other words do we build any immunities to the virus?
I AM SO VERY GLAD YOU TOOK OVER THIS FORUM... THANK YOU.
Meki
Doctor's Answer
by Douglas Dieterich, MD, Jun 16, 2008 09:23AM
, Jun 16, 2008 09:23AM
To: meki
Dear Meki,
44 questions are usually too many to answer in one post. I did try this one last week, but the computer lost my reply and it was so much work that I could not possibly do it again.
I am assuming that you were geno 3 and are now cured and have some neuropathy. That can be caused by the HCV, or the interferon or both. Many autoimmune issues are triggered by the interferon. Usually it is all over a year after stopping as I am guessing it is with you. Neuropathy is a real issue and very painful so I would not take it lightly.
1. Never. I always check once yearly, but probably not necessary after a year or two. I like to see the patients and make sure they are OK.
2. Cured
3. Yes
4. No
5. Yes
6. Usually HCV Ab remains positive, although sometimes it goes away.
7. No immunity. You can get it again. be careful out there! DTD
44 questions are usually too many to answer in one post. I did try this one last week, but the computer lost my reply and it was so much work that I could not possibly do it again.
I am assuming that you were geno 3 and are now cured and have some neuropathy. That can be caused by the HCV, or the interferon or both. Many autoimmune issues are triggered by the interferon. Usually it is all over a year after stopping as I am guessing it is with you. Neuropathy is a real issue and very painful so I would not take it lightly.
1. Never. I always check once yearly, but probably not necessary after a year or two. I like to see the patients and make sure they are OK.
2. Cured
3. Yes
4. No
5. Yes
6. Usually HCV Ab remains positive, although sometimes it goes away.
7. No immunity. You can get it again. be careful out there! DTD
I think I scared him away.... *sniffle*
Meki
Unfortunately the Neuropathy is getting worse as time goes on - so I figure I'll be living with it for some time... If it hasn't gone away yet.
But with the meds they make these days - and more in the future - I can live with pain - vs. dying... So it was all worth it.
Thank you for letting me know that I'm no longer contagious - that has weighed very heavily on my mind... As I know that my family is clear... I wish to keep them that way - and I feel very personally responsible to keep the HCV contained from my standpoint.
Thank you for your time and your answers --- including the double answers! *GRIN*
Meki
Note: I had 2-3 wks "leftover" drugs and due to extreme neurosis took them just to really kill the %#(&*^) virus. That's when the arm inflammation started and it began to recede when I stopped.
I HATED Procrit, but it worked.